The Journey of James Weston

Tuesday, March 21st, 2023 James had physical therapy at the house in the morning and we took him off the vent for it. We tried to get him to practice standing but he wasn't very interested.  Mom has been trying really hard to remove stress. 🧘🏻‍♀️ But nothing can get a medical mom more riled up than getting a denial from insurance. 😡 Today we received a notice of adverse benefit determination saying that they are not covering James' hospital stay for RSV. The paragraph that this Medicaid doctor typed out explaining the "rationale" behind the denial is ridiculous. "There is no documentation of continued breathing problems after your child arrived at the hospital. Your child got better quickly and went home". Not only did the ER doctor highly suggest getting admitted for overnight observation but James left the hospital on oxygen and has been back on the ventilator since discharge. The amount of text messages, phone calls, emails, faxes involved to submit an...

Monday, March 20th, 2023 Around 2:30am Mom was just getting to sleep as James had rough night with suctioning and needing oxygen on the vent. Mom figured She should call St Joe's PT to let them know that we wouldn't be coming in and James still wasn't doing well. James spent most of the day on the vent and did better most of the day. In the evening, Mom put him on the HME so we could go upstairs for a little bit before trach care. Monday is typically Mom's "On the Phone" day. We started off the morning with the Vision Therapy place following up to schedule James for an appointment! Yay! 👏 They wanted to get us in tomorrow but since he is still sick we scheduled for their next available which was late April. Mom also confirmed Early Steps for a revaluation appointment for Friday via Zoom and confirmed two appointments for this week for our pediatrician and pulmonology. And these were just the phone calls regarding James! We had early intervention therapy today...

Sunday, March 19th, 2023 Lazy Sunday as James is still recovering from RSV!  Scooting on the floor... Watching movies P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Saturday, March 18th, 2023 Today was Mom's Day off. A lot of times that is her sleeping in to catch up on the lack of sleep from the week, running errands for a few hours, and then coming home to clean the house. While Mom is running errands a lot of times she takes some time to sit in a parking lot because that is the only place to get stuff done. Supposedly this is called the "parking lot trend" and it is all the rage with moms. 🤣 Whether it is trying to update this blog, researching answers to medical questions in Facebook groups, emailing our medical supplier, or just catching up with a friend the To Do list is neverending. Being at home there is constant mom guilt to just start taking care of your baby, even if he is just watching a movie with Dad. P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Friday, March 17th, 2023 Early in the morning Mom called and left a message for the PT at the hospital to let them know James still wasn't feeling well and we wouldn't be coming in today. He had a fever and enjoyed playing with the thermometers. Then Mom contacted the new GI office to see if they had received the transfer of our medical records from our current GI office. They said they were behind on getting them into the systems and we're currently 1½ weeks out, so they probably hadn't gotten to them yet. Maybe it's because they still use fax? 🤷🏻‍♀️ So we weren't positive they were even transferred over, we just had to wait until next week to follow up again. Yay! We had him on the HME for the majority of the day but put him back on the vent at night. Low fever, diarrhea, and lots of suctioning of his nose are the main symptoms. Ever since we were in the ER we went back to only feeding him water in his G-tube. So that extra 1½ hours that we were trying formu...